What The Hell America!

When it was all over, Amanda Cruz felt like a phoenix, a new person rising from what had been. First, though, she had to go through the fire.

Pre-caregiving Amanda was a talker. When she was 2 years old, she always waved to everyone on the bus. In her 20s, she moved to Denmark for graduate school knowing nobody and loved it. Later, she worked for city government in a job connecting with constituents. She learned to speak Spanish so she could chat with more people.

In 2023, her mom was dealing with a cancer relapse that had progressed into her spine. That July, right before Cruz’s parents moved to her neighborhood in South Carolina to be near her, her mom also had a stroke.

Cruz helped all along, but in early 2024 she took on a lot more — meal prep, meds, following up on appointments, trips to water aerobics. She still worked at a small construction company, she still went to the YMCA for yoga and Pilates. But as she became more involved in her mother’s life, Cruz began to change.

As her mother’s illness progressed, Cruz found herself listening more intently in order to gauge her mother’s needs. She still carries that sense of quiet today.

Laura Bilson for NPR

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Laura Bilson for NPR

She became quieter, and she began to listen more. She was learning to hear beyond the words her mother said to understand what she really meant. Listening to judge whether her mother needed more pain meds, or to figure out what she really wanted at that moment, even if it was just a soda from the gas station. Her own words were saved for the daily rituals of bathing, medicine, questions about pain, and gently encouraging her mother to start saying her goodbyes.

“I must pull myself back to put her forward,” she said to herself.

They sheltered together in this pool of quiet while the world seemed to accelerate around them. There was another stroke in November. Afterward, on the way home from the hospital, her mother fell silent. She did not speak at all during dinner that night. Cruz knew in her gut that the words were not coming back.

Now listening became a whole-body experience, to gauge her mom’s expressions and anticipate her needs. At times, her mother screamed in pain, and she had to listen to that too.

Along the way she lost herself. “I was erased from myself by caring for this person,” she says. “I wasn’t my personality. I didn’t do things I liked anymore.” She was a people person, but there wasn’t time or space to engage with anyone besides her mother. To tell the truth, she wasn’t even interested. She found it hard to eat. The world seemed to be monochrome.

It’s well-known that family caregiving for sick or elderly adults can bring on stress, anxiety and depression. It can also turn you into someone you don’t even recognize. Caregivers say it scrambles old habits and patterns, rearranges intimate relationships, and forces you to confront your limits. It can excavate and reorganize the soul, what one caregiver calls mind and body fracking.

Amanda Cruz felt her whole identity was shifting. She felt entwined with her mother, body and soul, but mostly all she could do is watch her suffer. She says now that God was pressing her through her fear. Only after her mother died in December would she find out what was on the other side.

Amanda Cruz as a baby, with her mother, Lisa Thurman. As her mother’s illness progressed, Cruz felt increasingly entwined with her.

Laura Bilson for NPR

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Laura Bilson for NPR

The c-word

In 2009, two researchers proposed an explanation for why caregiving for an adult who is ill or disabled can be so profound. Their argument, simply called “caregiver identity theory,” is now widely accepted among psychologists and social workers who study and help caregivers.

The theory addresses a question that stumped social workers and researchers: Why don’t caregivers ask for help and use the support that’s already out there? Identity theory suggests one reason: People don’t think of themselves that way. The c-word doesn’t resonate.

But understanding caregiving as an identity transition can help people make sense of this phase of life. Just like having a baby, like getting married or switching careers, for many caregivers, it’s all-encompassing, and changes how you see yourself.

The creators of caregiver identity theory, the late psychologist Karl Kosloski of the University of Nebraska Omaha and gerontologist Rhonda Montgomery of the University of Wisconsin, Milwaukee, outlined five phases in the way caregiving shakes up identity. Often, you start by taking on little things like running errands and raking the lawn, but your life is otherwise the same. By the last phases you might well be helping seven days a week with everything from meals to hygiene. You don’t have time for anything else you used to do. Maybe you don’t even really want to. Big things, like parenting and work, can fall by the wayside.

At this point, your old sense of yourself as a worker, spouse, parent or friend doesn’t match up to what you do all day. The person you care for is no longer simply your spouse or grandparent but also a patient, a care recipient or care partner. The disconnect is disorienting.

It can also make you feel out of step with other people. As a caregiver, you’re immersed in a daily routine of essential human needs, dealing with ground truths about life. At some points, Cruz had to decide whether to give her mother enough morphine to silence her pain, or back off on the drug in the hopes that she might be alert enough to talk to her again, to say farewell. In hands-on caregiving, life and death decisions are common. Then, at the office or the store, people are chatting about vacations or buying a new car. It seems unbearably trivial, and you feel even more alone.

Managing her mother’s pain medicines was one of the more harrowing parts of the caregiving experience for Cruz.

Laura Bilson for NPR

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Laura Bilson for NPR

You might feel lost, like Cruz did. Or you might feel just “off” all the time, says Donna Thomson, who leads several caregiving-related programs at McMaster University in Ontario and cares for her adult son. You might feel tired but restless, unable to enjoy old pleasures, lonely but unwilling to reach out.

There’s often a moment when you realize that there’s no going back, says Thomson. “I think it’s a transformation for everybody,” she adds. “And it’s permanent. This idea that you’ll go back to the person you were before, that’s never going to happen.”

Finding the old you in the new you

Given the emotional weight of the role, caregivers are often told to practice self-care: Go for a walk, do yoga. Caregiver identity theory suggests another approach: Think about who you were before, who you are now, and how those two yous relate.

Because, if the existential pain of caregiving is due to a gap between who you think you’re supposed to be (your old self), and who you are now (caregiver self), you need to bridge the gap.

That might mean, for instance, hiring someone to do tasks that conflict with how you see yourself. You might hate helping your mother with bathing, because you’re also still her son. Maybe you can pay a shower aide to do it.

Or, you can focus on ways your old self flows into the new one. Aaron Blight, a professor of public health at Shenandoah University, created worksheets and questionnaires that help people think this through.

Thomson coaches caregivers to make a pie chart of how they spend their days, graphing what activities they do and for how long. They’re often blown away by how much time is devoted to caregiving, and it helps them see the shape of their own life more clearly.

Just embracing the label can provide some relief. Research shows that people who adopt the identity feel better about what they do and are able to identify what support they need, and how and where to ask for it. “It’s very important to be able to name it and describe it, even just in your own head,” says Thomson.

Pulling threads from your past selves into the present can also help, says Allison Applebaum, a psychologist and geriatrician who leads a new center for caregivers at Mount Sinai hospital in the Bronx. At her previous position at Memorial Sloan-Kettering hospital, she developed “meaning-centered therapy for cancer caregivers,” which among other exercises reminds people to embrace aspects of themselves that endure — their sense of humor, or artistic sensibility, for instance.

It helps people see that caregiving builds on your life story, rather than tearing it down.

“I’m just the daughter”

Since she was a teenager, Carla Velastegui has cared for her mother, who has early-onset Parkinson’s disease. She’d go to all the doctor’s appointments to translate for her mom, who is from Colombia and speaks mostly Spanish. Velastegui sometimes noticed signs in the waiting room about caregivers, but she didn’t think it applied to her. “It never crossed my mind,” she says. “I would think: I’m just a daughter. I’m helping out.”

She says that’s partly cultural. In her community, it’s not “caregiving” so much as love, honor, what family does. “When my mom got her diagnosis, we all got that diagnosis,” she says.

It took years for Carla Velastegui to see herself as her mom Gina’s caregiver. For many years, she thought of helping her simply as what family does for each other. Here they celebrate together at Carla’s wedding.

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Velastegui family/‎

It didn’t help that doctors and nurses didn’t see her that way either. They sometimes questioned her, even asking her to leave the exam room because she was young. The enormous responsibility she held didn’t have a name. It was just how things were.

About eight years ago, when she was in her mid-20s, a new doctor took her aside: “How are you, the caregiver, doing?” Velastegui protested: I’m not a caregiver! I’m just a daughter. No, said the doctor. You’re here, you’re coordinating her medication, you’re involved every day. You are the caregiver — acknowledge it and own it.

Surprised, she went home and did some Googling. Now, it clicked. And this simple word changed her. “It gave me the confidence to speak up, to ask questions, to advocate for her needs,” she says.

The word helped her connect her with support groups, ask for help, and begin advocating for others like her. More than that, she says, “it completely changed how I see myself.” “Caregiver” validated her reality, her grief, and her sense of purpose.

The label doesn’t always exactly fit: Some people feel more like a “care partner,” or an advocate. Whatever term you use, it’s a way to acknowledge that you share an identity with 53 million others in the United States, people who will recognize what you’re going through and reflect back this new sense of self.

Along these lines, a new project from The Joint Commission, a nonprofit health care accrediting organization, and the caregiver-focused company Archangels lets unpaid family caregivers sign up for a Care Badge, a way to announce their status online to potential employers and everyone else.

When she needs a break from intensive caregiving, Velastegui (here with her mother at the beach) goes paddle-boarding. It reminds her of the outdoorsy person she’s always been.

Velastegui family

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Velastegui family

Caregiving is now a core part of Carla Velastegui’s identity. She now works in health care technology to fix some of the system’s problems. She sits on advisory groups as a patient representative and volunteers for organizations like the Parkinson’s Foundation. And when she walks in the door to the doctor’s office, she says: “Hi, this is Gina. I’m Carla, her caregiver and daughter.”

The phoenix takes flight

During all the changes in Amanda Cruz’s life, through all the difficulties, her husband, Johnny Cruz, had been by her side. In the last days of her mother’s life, he stepped in. The grief and the strain had become too much for Cruz. Her husband urged her to go home, and he took over. He stayed there with her mom, sleeping by her side, holding her hand as she died.

He is a veteran and former police officer and had carried the memory of death for many decades. Caring for Cruz’s mother as she was dying changed him too. It broke him and it redeemed him, he says. It brought something back to him, making him feel more human again.

After her mother died, Cruz fell apart, body and soul. She had migraines, arthritis, bronchitis, every system rebelling. The broken part of her soul died along with her mother, Cruz says. But parts of the experience remain. Some new part of her was forged during her mother’s illness, turning her into Amanda 2.0. She feels like a phoenix, born from the ashes.

Helping her mother die was terrifying. Now, she finds fellowship in suffering and loss. When someone else is struggling, she feels like she knows what to say.

She is still slow and quiet, but it’s no longer a retreat. It’s a way to connect. The same way she learned to step back and listen to her mom, she tunes in to all kinds of people. It’s a gift delivered by heartache. “I want to hear what people are trying to say, so I can hear more deeply,” she says. She thinks about the force of grief, how near it is to love and how it has its own purpose.

And as she goes through her daily routine, she finds herself swelling with empathy for all sorts of people. “I look at people in the gas station, or the grocery store, and I think how pretty they are, how beautiful, their eyes, their hair.” She listens. She pays attention.

Kat McGowan is a caregiving reporter based in Berkeley, Calif. This story was supported by the Rosalynn Carter Fellowships for Mental Health Journalism.